Knowledge-sourcing network for patients, families and healthcare professionals in rare diseases


Rare Disease Communities

RARE-e-CONNECT communities are secure spaces for knowledge and resource sharing between Healthcare Professionals and between Patients, respectively. 

Each community represents a group of complex, rare diseases organised according to the organ or organ complex they primarily affect, or its cause (where it is known).

There are more than 6000 registered rare diseases worldwide.

* Healthcare Professional Communities are not accessible to patients or vice versa.


Healthcare Teams

Virtual spaces where Healthcare Professionals can meet at mutually convenient hours. Time and space don’t have to stand in the way of effective collaboration and coordinated care.

  • Schedule single- or multidisciplinary meetings with colleagues at a time of convenience
  • Discuss patient cases with colleagues for decision-making support and/or coordination of care

  • Utilise real-time and/or asynchronous communication for any other professional purpose

Key features

Specialist repository

An extensive repository of expert centres, organised by rare disease group and made available to patients and healthcare professionals for treatment-seeking or collaboration.

Online Communities

Secure spaces for large-audience discussions on healthcare practice and patient support, for knowledge-building and resource-sharing. Distinct communities for healthcare professionals and patients, respectively.

Healthcare Teams

Schedule private meetings with colleagues from the same or different disciplines for decision-making support or any other professional purpose. Coordinated multidisciplinary care made easy and practical.


Online seminars on complex, rare diseases for Healthcare Professionals who can also request webinars on topics of interest.

Round-the-clock information

Automatic review of medical databases and relevant sources and stay up to date about rare diseases.

Patient Stories

Exchange of experience and best practices by "veteran" to newly-diagnosed patients. Source of knowledge and support.